Re: [NLMSF] Digest for nlmsf@googlegroups.com - 2 Messages in 1 Topic

[David Murphy]

NED = No Evidence of Disease

 

It's ALSO nice to be a NERD (NERD = No Evidence of Recurrent Disease)

---

From: "nl...@googlegroups.com" <nl...@googlegroups.com>
To: Digest Recipients <nl...@googlegroups.com>
Sent: Sat, November 10, 2012 11:34:09 AM
Subject: [NLMSF] Digest for nl...@googlegroups.com - 2 Messages in 1 Topic

  Today's Topic Summary

Group: http://groups.google.com/group/nlmsf/topics

• "NED"? [2 Updates]

 "NED"?

Tina Rasmusson <rasmu...@gmail.com> Nov 09 08:22PM -0800  

Holly, 39 yrs old I was diagnosed with LMS on 8-24-12 that metasized to my
lungs, 1st lung biopsy 8-28-12, had Uterine artery embolizm 9-29-11 to
shrink the fibroid, anywho, had a jet ski accident this summer and they
found multiple nodules on my right lung, a few they could see on the left
lung,2nd lung biopsy confirmed Oct 1st LMS had a full hysterectomy and
another fibroid was in my uterus, no pathology results from the uterus as
it was dead. I am doing Gemcitabine and Docetaxel now, only round 2 and it
is kicking my Butt... I was told I could live 1yr to 5 yrs depending on
treatment, No Lung Transplant for me or surgery not an option in my case?
HELP what is Juicing and honestly does this really really work... what do i
do.. I trust my oncologist with my life we have a great relationship, had
gotten a 2nd Opinion? NEED ADVICE!!!! PLEASE
 
On Saturday, September 22, 2012 7:22:19 PM UTC-5, Holly Starks wrote:
 


 

"Adria B" <abo...@tx.rr.com> Nov 10 10:04AM -0600  

Hi Everyone,

I don't normally reply all the time, but, I read all of your comments and
pray for each of you.

I am NED with surgery only. We shall hope it stays that way, I go back to
MD Anderson on 12/4 for my 6 month check up.

Most of ya'll know my story...I had LMS in the upper abdomen area, no Uterus
to attack! It was apparently predicted to be "attached" to my pancreas,
liver, kidney, aorta and stretching to the vena cava. It ended up not being
attached.

I highly recommend MD Anderson to all LMS patients. I know it may be hard
for you to travel to Houston, but, it's worth it. I give God all the glory,
but, He guided the physicians.

The more research I do on LMS, the more confused I get...it's just not a
cancer that we can say "I know what caused this".

Eat lots of spicy food, green foods, be careful with sugar (even in fruit).
That's my belief.

Stay strong, keep up your faith, write about your experience, share it with
everyone. Open a Caringbridge, it's the BEST way to journal and heal.

Adria Boyd
https://www.caringbridge.org/visit/adriaboyd

Love ya'll!
 
-----Original Message-----
From: nl...@googlegroups.com [mailto:nl...@googlegroups.com] On Behalf Of
Tina Rasmusson
Sent: Friday, November 09, 2012 10:22 PM
To: nl...@googlegroups.com
Cc: nl...@googlegroups.com; lbad...@gmail.com
Subject: Re: [NLMSF] "NED"?
 
 


Holly, 39 yrs old I was diagnosed with LMS on 8-24-12 that metasized to my
lungs, 1st lung biopsy 8-28-12, had Uterine artery embolizm 9-29-11 to
shrink the fibroid, anywho, had a jet ski accident this summer and they
found multiple nodules on my right lung, a few they could see on the left
lung,2nd lung biopsy confirmed Oct 1st LMS had a full hysterectomy and
another fibroid was in my uterus, no pathology results from the uterus as it
was dead. I am doing Gemcitabine and Docetaxel now, only round 2 and it is
kicking my Butt... I was told I could live 1yr to 5 yrs depending on
treatment, No Lung Transplant for me or surgery not an option in my case?
HELP what is Juicing and honestly does this really really work... what do i
do.. I trust my oncologist with my life we have a great relationship, had
gotten a 2nd Opinion? NEED ADVICE!!!! PLEASE
 
On Saturday, September 22, 2012 7:22:19 PM UTC-5, Holly Starks wrote:
 
I can tell you my deal. I was diagonsed with LMS in 2008...totally
unbelievable when they told me. I had hi-grade tumor 6lbs in my uterus....go
figure,, well I had a radical hyster....oh I forgot,,,they did not tell me
that I had LMS until two weeks after the operation.....AND I AM A
VETERAN....SO...anyways let me be nice....had the operation at the VAMC in
Los Angeles....so.....after two weeks...they told me LMS....stuck me in a
room with a tape and machine and told me to watch the movie about chemo and
radiation....well I did alot of research and could not believe I had this
LMS...the more I did research the more I was trippin.....so I figure if they
got the tumor out...why do I need radiation and chemo...your going to sap my
good cells,,,,so I refuse the treatment and decided to have a sit and wait
deal and not think about it and not claim it.....so I resume my exercise and
juicing....so I am still in remission or NED.....I just dont think about it
in my mind...and if it should return..well then I will deal with it....I
know that may be harsh..but that is what I did.......and so far I do have my
Cscans and PScans but I need to find a LMS cancer clinic here in Florida and
I am a Veteran so thank God I do not have to pay for anything...my Veteran
benefits cover it.....
 
 
Holly
 
 
_____
 
From: Lise Nadeau <lbad...@gmail.com>
To: nlmsf <nl...@googlegroups.com>
Sent: Saturday, September 22, 2012 8:35 AM
Subject: [NLMSF] "NED"?
 
 
Hi I have a question about when people say NED ( no evidence of cancer). I
understand that it "means" cancer is not found on the ctscan...but I guess I
am wondering how many of you have gotten tthere with:

* NED with treatment, no surgery
* NED with surgery only
* NED with surgery and Treatment?

If I could ask what was the course of thereapy ( protocols) that got you
to that awesome stage of NED?!!)
My question might shed some light for my own knowldege and to absorbe some
information I received as a 2nd opinion.
I am not giving up... but I think I need to take my head ouf of the sand and
take a reality check and assess my situation to modify some lifestyle
choices.
There are allot of things I want to do and Travelling is one. So I need to
decide if going live in a city I don't know to undergo "clinical trials" is
something I want to spend "time" doing. Or do I want to "enjoy" my life
fully still not giving hope.. everything is possible.
I am keeping my positive outlook that I will laugh at this medical anomalie
called LMS one day in the face...but with a pinch of realism that I need to
live my life and not "wait" for the "miracle of life to happen".... I have
to live to life to make it called a miracle.
If that makes sense?
I hope I don't offend anyone with this email. I would VERY MUCH appreciate
feedback in regards to the 3 posibilities of NED.

All I know for sure.... is that yes ONE day I too shall leave this planet.
Just not ready for it to be in the time frame "they" have given me.
I am telling "cancer to F-OFF.... and choosing life.

Lise surgery- undergoing all protocols treatment and Not NED YET!!!
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[A]

Oh Lord, I would love to be a nerd! I would even wear a pocket protector. I'm so afraid of what's next... 3 new spots, 1 on my right ventricle of my heart, 1 by my right kidney, and 1 by my liver. I have so much faith in our Lord Jesus Christ. I do... But hearing the last news, platelets being so low, constant throbbing and pain, I'm afraid. When my doctor tells me you will die from this cancer with tears in her eyes, I don't want to accept it. I still have so much to do... I haven't gotten my book published yet... I haven't been to Spain or Disney World, I haven't helped the needy, I haven't been back to the children's hospital to entertain the sick children. I haven't done my will. I haven't painted that painting. I am praying, crying, and hoping that He is with me right now guiding me, directing me to my next ride here on Earth. I'm always praying for you my friends. I'm sorry for this horrible disease. I will NEVER give up. Hope for miracles always love each moment smile even to a stranger, you might make his/her day. 

Love Always,

Annette Atkisson

[Tim Maher]

Hi Annette,

 

I hope you and your family are hanging in there and can at least find some joy and happiness in the upcoming holidays.

 

We are still uncertain where Lauren stands and will be until next month when she has her next scans.

 

Take care,

Tim